Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

In Decade’s Time, Childhood Disabilities Rise 16 Percent

Significantly more children have disabilities today as compared to a decade ago, largely due to increased diagnosis of neurodevelopmental and mental health conditions, researchers say.

The prevalence of disability in children grew more than 16 percent in 10 years, according to findings presented Sunday at the Pediatric Academic Societies annual meeting, a gathering of four leading pediatric organizations held in Washington, D.C.

It’s unclear what’s behind the rise in disability prevalence, though greater diagnosis of autism could be at least partly responsible, said Amy Houtrow of the Children’s Hospital of Pittsburgh and the University of Pittsburgh School of Medicine who is lead author of the study.

Researchers looked at data from the National Health Interview Survey — a poll of more than 100,000 parents of children up to age 17 conducted by the U.S. Centers for Disease Control and Prevention — comparing responses from 2009-2010 to those collected in 2001-2002.

As part of the survey, parents were asked whether their children had any limitations and, if so, what type of condition their deficits were attributable to. Children who were reported to have a limitation were divided into three groups: physical disabilities, neurodevelopmental or mental health conditions and other.

Ultimately, researchers found that six million children had a disability in 2009-2010, an increase of one million over the previous sampling. At the same time, the prevalence of physical disabilities declined while neurodevelopmental and mental health conditions rose.

Most strikingly, the study found that the rate of neurodevelopmental disabilities nearly doubled for children under age 6.

While kids living in poverty had the highest rates of disability in both time periods studied, the largest increase in childhood disability rates was seen in kids from households with higher incomes.

“The survey did not break out autism, but we suspect that some of the increase in neurodevelopmental disabilities is due to the rising incidence or recognition of autism spectrum disorders,” said Houtrow, adding that more research is needed to fully assess what’s behind the growth in disability prevalence.

Feds To Move Away From DSM

Just weeks before a new version of the Diagnostic and Statistical Manual of Mental Disorders is scheduled for release, the head of the National Institute of Mental Health says it’s time to change how mental conditions are categorized.

The agency will be redirecting its research focus away from the symptom-based diagnostic criteria of the DSM toward more scientifically verifiable standards, the mental health agency’s director, Thomas Insel, wrote in a recent blog post.

By shifting away from thinking about mental disorders as they are currently classified in the DSM, Insel says researchers will be able to establish a new diagnostic system based on emerging science.

“Unlike our definitions of ischemic heart disease, lymphoma or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure,” Insel wrote. “Patients with mental disorders deserve better.”

Accordingly, Insel says the NIMH is launching a new project known as Research Domain Criteria designed to collect the data needed for a new classification system by using genetics, imaging, cognitive science and other techniques and supporting studies that overlap currently existing categories.

Insel calls this new approach a “research framework” and acknowledges that it will be a long time before it can be applied as a clinical tool but he says it’s a valuable first step toward a more exact diagnostic method.

The comments come as the first new version of the DSM in more than a decade is slated for release in less than two weeks. The fifth edition of the manual — often considered the bible of psychiatry — will be unveiled at the American Psychiatric Association’s annual meeting beginning May 18 in San Francisco.

While officials at the psychiatric organization agreed that they would like to see biomarkers to pinpoint mental disorders with greater accuracy, David Kupfer, chair of the group’s DSM-5 Task Force, said in a statement that such discoveries remain “disappointingly distant.”

“Efforts like the National Institute of Mental Health’s Research Domain Criteria (RDoC) are vital to the continued progress of our collective understanding of mental disorders. But they cannot serve us in the here and now, and they cannot supplant DSM-5,” Kupfer said. “In the meantime, should we merely hand patients another promissory note that something may happen sometime?”

The DSM update has been met with significant controversy, particularly surrounding changes to the definition of autism. The new version is expected to eliminate Asperger’s syndrome and fold it as well as childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified under a broader diagnosis of “autism spectrum disorder.”

Separately, the new manual is also expected to replace “mental retardation” with the more commonly accepted term “intellectual disability.” What’s more, the definition of the disorder is being tweaked to put less emphasis on IQ score and allow more consideration for clinical assessment.

The DSM is relied on by mental health professionals, researchers, insurers and others to determine what symptoms merit a clinical diagnosis. The current edition was originally released in 1994 and was updated in 2000.

Dedicated to providing Transparency and Facts to the parents and patrons of the Fox C-6 School District in Arnold, MO. I've been told that our superintendent reads my blog. She says a lot of what I write is not true. I highly disagree. I strive for accuracy and the truth. Blanket statements such as hers are no longer being accepted by our community. Please provide specifics as to what is not true on this blog so that I may correct them right away. So, far I only hear crickets chirping!

Thursday, May 2, 2013

Dear Colleague Letter On Retaliation Law from the U.S. Department of Education's Office for Civil Rights

A friend and parent who has had similar issues dealing with their school district pointed out to me today that the United States Department of Education's Office for Civil Rights (ED OCR) recently posted a Dear Colleague Letter on their website regarding Retaliation. I find it funny that the Dear Colleague letter was posted one day before ED OCR sent out a monitoring letter to our school district that had been delayed for nearly 9 months. ED OCR will occasionally post Dear Colleague letters when they see a preponderance of problems in school districts, colleges and universities that fall under their jurisdiction. This Dear Colleague letter is significant in the fact that our school district has taken the stance over the last 5 years that they have been doing things properly according to what they have been told by the district attorneys. However, as documented in several monitoring letters sent to our school district from ED OCR, Fox C-6 HAS NOT been properly following the law. More significant is the fact that because of our efforts in asking our school district and school board to do the right thing and properly follow the law, my family and I have been the target of numerous and continued retaliatory actions by our school district. I'm sure our Superintendent will deny that. I'll just go ahead and present the facts for everyone and that way you can decide for yourself. I'm sure that that the retaliation has been done in order to keep us from pursuing the issue with the federal agencies and hoping that we would eventually give up. It's worked for our school district in the past. So why quit now?

I believe our Superintendent and school district attorneys are probably disappointed with the fact that we haven't stopped our efforts to get our school district to do the right thing. I'm sure they thought I would have given up after receiving a "Cease and Desist" letter from the latest district attorney (#3) handling the case that was sent in August 2012. Well maybe the attorneys didn't want us to stop because they get paid to make things go away. Our Superintendent has to be asking herself why I haven't given up after reading all of the defamatory and slanderous remarks made against me and my family in online forums by supporters of our superintendent and school board members. She must really be perplexed. It could have something to do with the fact that I know our school district is in the wrong and that I will make sure that the truth comes out. Eventually my efforts will help a lot of other students and parents and keep them from having to go through the same thing. I'm certainly not going to allow our Superintendent to continue to make false and misleading statements about me and what the district is doing. I will always choose to take the high road and do what is right.

So, what are some examples of retaliation? Well, one of the first occurrences of retaliation from our school district after we filed a complaint with ED OCR was when our school Superintendent Dianne Brown (now Critchlow) refused to let me speak with our school board during closed session in 2008. I had already been speaking with then board president Wes Griffith and board secretary Debby Davis prior to the start of that night's meeting. School board members Dan Smith, Ruth Ann Newman and Assistant Superintendent Dan Baker were also there. I was talking to Wes Griffith and Debby Davis about being put onto the next month's closed session agenda after Wes Griffith had forgotten to put me on that night's agenda. I had spoken with him earlier that afternoon on the phone and he had agreed to allow me to speak to the board that night per board policy. Our board secretary had already checked the schedule for the next month's meeting and had already informed our board president and I that I could be on next month's agenda when Superintendent Dianne Brown arrived at the meeting. She immediately informed me that the school board had already discussed my issues and that they had decided that they were not going to meet with me. It sounded to me like it was our Superintendent's decision and NOT our school board's decision that they weren't going to meet with me. Why wouldn't our school board president and school board secretary know that they had already decided not to me with when they told me that they would put me on next month's agenda? How difficult is it for our Superintendent to tell the truth? Needless to say, I didn't get my chance to speak with the board at the next month's meeting after our Superintendent made her decision for the board. That is a problem for both our school board and our community.

In speaking with attorneys from the Kansas City Office for Civil Rights at a seminar a couple of years ago, they informed me that our Superintendent's actions in 2008 sounded like retaliation to them. I must point out that the KC ED OCR attorneys at the seminar weren't the same attorneys that have been handling our complaint since August of 2008. It was good to know that some ED OCR attorneys considered it retaliation when our Superintendent blocked me from speaking with our school board. That's how she has been running our district and our board has done nothing to stop it.

The retaliation has only gotten worse since then. I also know that this has happened to another parent in our district that filed a complaint with ED OCR and MO DESE. But, since it was the husband of the teacher that made the retaliatory comments towards that parent, ED OCR didn't consider it to be retaliation from the school district. I would have to say that the Kansas City ED OCR Office has been walking a thin line for quite some time on what IS or IS NOT retaliation. Hopefully the Dear Colleague letter from Washington D.C. will bring about some changes in the Kansas City ED OCR office. I know that teachers and staff in our school district are afraid to speak up and say anything for fear of retaliation from our Superintendent and Central Office Administrators. School board members Linda Nash, Cheryl Hermann and John Laughlin all acted as if they were unaware that school employees were afraid to speak up and point out problems in our district at a meeting held before the March school board meeting with two recipients of "Cease and Desist" letters from our Superintendent. Cheryl Hermann admitted at that meeting that she wasn't even aware of the fact that "Cease and Desist" letters prior to the issue being brought out in the open. It seems that our Superintendent has a problem with informing our school board members about issues in our school district.

The Cease and Desist letter that I received in August 2012 from the school district attorney informed me that if I continued to speak with people in our community and current and former teachers and administrators that the district would take legal action against me. The district didn't want me talking about the complaints that we had filed with ED OCR and other issues in our school district. I guess I should say thank you to our Superintendent for formally documenting the district's retaliation towards me and my family for filing OCR complaints against our school district. I had no intentions of filing an OCR complaint against Fox until I was told that I should file a complaint in 2008 by a MO DESE Compliance Officer. He told me that he thought our school district wasn't following the law and I should file a complaint. If ED OCR didn't think my complaint was valid it would be dismissed.

Well, our complaint with the district wasn't dismissed and our Superintendent wasn't happy with the fact that I filed a complaint. So much so that she had Vern Sullivan a former Fox C-6 School Board Member and former employee and Friends of Fox political action committee representative call my father into her office. She told my father to tell me to stop pursuing things with the district. My father had worked for the school district for 42 years and was an assistant superintendent for more than 20 years. My father has also been the target of several online posts that have been made on the Topix online forum. Sometimes the online posts contain information that is not public information and only select administrators would or should know that information. That is why I fully believe that some of those posters are school administrators, their spouses, or their family and friends. Many of the retaliatory online comments made against me and my family directly reference complaints filed against our district with ED OCR. The general public doesn't know or care about our issues and concerns with the school district. But, our Superintendent certainly does. She only wants the public to know that Fox is a National District of Character and that our district is in the Top 10 of something in our state.

I hope our current school board and our former school board members take the time to read the Dear Colleague Letter from the U.S. Department of Education's Office for Civil Rights. This Dear Colleague letter points out how the U.S. Department of Justice (DOJ) gets involved with cases and how federal monies can be terminated from the Department to the recipient. The letter states why the USDA Office for Civil Rights (USDA OCR) referred our USDA case to the U.S. Department of Justice. Fox C-6 refused to comply with their Final Agency Decision that was sent to the school district in August 2011. The USDA's referral to the DOJ was not made due to retaliation from the district or supporters of the district. But, now that the Department of Justice has our case, they now have the ability to investigate any retaliation that has been occurring ever since our complaints were filed with ED OCR and USDA OCR. The Dear Colleague letter which applies to both ED OCR and USDA OCR states that, "The enforcement actions available to OCR include initiating administrative proceedings to suspend, terminate, or refuse to grant or continue financial assistance made available through the Department to the recipient; or referring the case to the U.S. Department of Justice for judicial proceedings." This language is in the ED and USDA's Case Processing Manuals. It is being spelled out in this letter as a reminder to school districts, colleges and universities due to recent cases and DOJ rulings.

ED OCR, or at least the Kansas City ED OCR Office that we have been dealing with seems to have difficulty recognizing retaliation. The KC ED OCR Office also doesn't seem to put much effort towards enforcing the law based upon the fact that they continue to issue new deadlines each time our school district fails to meet the deadlines set by ED OCR. If ED OCR were to follow their guidelines of trying to close cases out in 180 days rather than allowing things to continue for nearly 5 years, I believe that their office could save the taxpayers quite a bit of money. With attorneys at ED OCR making over $100,000 per year, it adds up when there are a couple of attorneys assigned to a case. I know there a lot of other cases that have been in "monitoring" status for many years. In fact, the attorneys working our case laughed about the fact that ED OCR has some cases that have been in monitoring for more than 10 years. It seems that their might be a management issue that needs to be addressed at ED OCR so cases can get resolved in a more timely manner.

After Flight Diverted, Teen With Special Needs Goes Missing

While flying from Idaho to Florida, a teen with an Asperger’s-like condition found his plane unexpectedly diverted to an unfamiliar city and wound up wandering the streets all alone.

Joshua Arvin, 15, was on his way home from his boarding school when his flight to Fort Lauderdale, Fla. instead stopped in Tampa. Rather than follow the rest of the passengers to a bus for the remainder of the journey, the teen attempted to make his own way.

Arvin’s mother, Tracy, frantically called the airline and airport police with no luck tracking down her son. She later learned that the teen tried to charter a bus before taking a cab to a local bus station. He was ultimately found on a downtown street corner after 11 p.m by a good Samaritan who called police.

The airline — US Airways — says it does not accept responsibility for unaccompanied minors on connecting flights, reports WTSP, the Tampa CBS affiliate.

States Get Ranked On Disability Services

Arizona is the place to be when it comes to services for people with intellectual and developmental disabilities, according to a new national ranking.

The listing is part of a report set to be released Thursday by United Cerebral Palsy, which ranks disability services in all 50 states and the District of Columbia.

Specifically, the advocacy organization weighed each state’s track record in promoting independence and productivity, ensuring quality and safety, keeping families together and reaching people in need.

In addition to Arizona, the highest ranked states were New Hampshire, Oregon, Vermont and California.

Top performing states were largely clustered in the Northeast and on the West Coast. As in past years, the standouts represented both big and small states as well as those with high and low tax burdens. What’s more, the amount they spent to provide community supports for individuals with disabilities varied.

Mississippi was ranked last for the seventh straight year. Arkansas, Texas, Illinois and Virginia filled out the bottom five.

The report — which is produced annually — is largely based on data from 2011, the most recent available.

States are increasingly shifting to a focus on supports within the community, the analysis found. Currently, 38 states indicate that at least 80 percent of residents with developmental disabilities that they serve live in the community. These same states also devote at least 80 percent of their resources designated for this population toward community supports. That’s up from 14 states in 2007.

While some states outshined others the report authors caution that there’s work to do nationwide. Fewer than a third of those with developmental disabilities are employed competitively in the vast majority of states. And, waiting lists for residential services remain high, with 268,000 people in limbo compared to 138,000 in 2007, the report indicates.

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When I was in kindergarten, my class put on a Mother's Day rendition of the play Henny Penny for our mothers, grandmothers, and other adoring fans. Almost three decades later I entered the education reform community and have been reliving scenes from this fable ever since. Only in this grown-up version instead of Henny Penny, Cocky Locky, Ducky Lucky, and Goosey Loosey confusing an acorn falling from a tree for a falling sky, it is the varying factions paid to protect the education status quo who are confusing an attempt to authentically engage parents, evaluate teachers partially on student progress and expand high quality education options with a falling sky.

Anyone without a Masters in Education who has tried to understand Missouri's current school report card would appreciate why a new one is needed. The lobbyists representing the teacher unions, administrators, school boards, and others assigned to protect the current system went pleading to legislators and editorial boards that if this bill became law, the sky would fall. They claimed that once a transparent school report card was implemented the first thing to fall from the sky would be a voucher system, then teachers and students with exceptionally low morale would come tumbling after, followed closely behind would be plummeting real estate values. Lastly they told legislators they would need to find much bigger umbrellas to protect themselves from the hoards of parents falling from the sky onto the Capitol grounds while advocating for expanded school choice.

Unfortunately for all those who spread the message to policy makers that the sky would fall if parents really knew how schools were doing, the real numbers tell a different story. This preliminary information, obtained from DESE through an open records request, reveals that about 75 percent of schools in Missouri would get an A or a B under the proposed legislation and that less than 15 percent of Missouri's 2000+ schools would be deemed failing.

Likewise, when reformers and legislators have proposed teacher evaluations be based in part on student academic growth, the education establishment's reaction has been paramount to Henny Penny's. For example, in Missouri an American Federation of Teachers Local 420 representative told the Senate Education Committee that if we altered teacher evaluations and then "...fired all the bad teachers in places like Saint Louis..." we would have "tons" classrooms with no certified teacher. However, in a New York Times article on March 31, 2013 it was reported that changing evaluations only resulted in a small increase in the number of teachers rated below effective. These findings support what education reformers in Missouri have been saying -- we don't want to change evaluations so that the sky will fall on Missouri's teachers. We want to change evaluations to begin measuring and providing meaningful feedback to educators about the only thing that really matters, student academic growth.

Lastly, the screams to duck and cover because the sky is going to crush us all are at their most shrill when someone dare suggest children should have access to more high quality education options. To see examples of this you again need not look beyond Jefferson City, Missouri. This year, Representative Dwight Scharnhorst (R-Saint Louis County) and Representative Jay Barnes(R-Jefferson City) each are offering modest proposals to provide educational opportunities to unique learners. Scharnhorst offered HB458 that would provide a scholarship tax credits to children on the autism spectrum. Barnes offered HB470 to allow enrollment in a virtual school program for no more than 1.75 percent of Missouri K-12 students. These two bills combined would affect an incredibly small number of children in an enormously positive way.

To no one's surprise when these two bills started moving through the Missouri House Elementary and Secondary Education Committee first the administrators association began running through the Capitol hallways and sending emails shouting that the sky was falling. They were followed closely by the teacher unions who went along with them yelling about the falling sky without question. Eventually the school board association and cooperating school districts of both Kansas City and St. Louis went along with the others. They were all chanting in panicked tones to legislators that if they give permission to parents of autistic children to send their child to a school better equipped to educate them that the sky would fall and crush the entire $7 billion public education system in Missouri.

Once again, the evidence that such panic is not only unnecessary but also in many ways a deliberate attempt to mislead, is strong. Idaho, Wisconsin, Florida, Michigan, and Virginia all have virtual school options and yet the sky did not fall on their still strong traditional public school systems. Likewise, Utah, Arizona, Oklahoma, Louisiana, Mississippi, and Georgia have scholarship tax credits for children with special needs and in each of those states the sky is still firmly in place.

At the end of Henny Penny, all the barnyard animals are so desperate to get to the King to warn him of the falling sky that they believe Foxy Loxy when she tells them she knows a short cut. Sadly for them, they follow Foxy into her lair where she presumably eats them. The barnyard animals' ridiculous panic about the falling sky blinds them from the actually dangerous fox. This is also not much different than what is happening with in the factions of the education establishment. Their fear of change is blinding them from the real danger -- they are becoming stagnant and unable to meet the changing needs of America's parents and students. I would hate to see our public school system meet the same fate as Henny Penny and the bunch. Maybe soon one of them will look up and see the "dangers" are actually just acorns.

THE ASSISTANT SECRETARY

April 24, 2013

Dear Colleague:
The Office for Civil Rights (OCR) in the United States Department of Education (Department) is responsible for enforcing Federal civil rights laws that prohibit discrimination based on race, color, national origin, sex, disability, or age by recipients of Federal financial assistance (recipient(s)) from the Department.1Although a significant portion of the complaints filed with OCR in recent years have included retaliation claims, OCR has never before issued public guidance on this important subject. The purpose of this letter is to remind school districts, postsecondary institutions, and other recipients that retaliation is also a violation of Federal law.2 This letter seeks to clarify the basic principles of retaliation law and to describe OCR’s methods of enforcement.
The ability of individuals to oppose discriminatory practices, and to participate in OCR investigations and other proceedings, is critical to ensuring equal educational opportunity in accordance with Federal civil rights laws. Discriminatory practices are often only raised and remedied when students, parents, teachers, coaches, and others can report such practices to school administrators without the fear of retaliation. Individuals should be commended when they raise concerns about compliance with the Federal civil rights laws, not punished for doing so.
The Federal civil rights laws make it unlawful to retaliate against an individual for the purpose of interfering with any right or privilege secured by these laws.3 If, for example, an individual brings concerns about possible civil rights problems to a school’s attention, it is unlawful for the school to retaliate against that individual for doing so. It is also unlawful to retaliate against an individual because he or she made a complaint, testified, or participated in any manner in an OCR investigation or proceeding. Thus, once a student, parent, teacher, coach, or other individual complains formally or informally to a school about a potential civil rights violation or participates in an OCR investigation or proceeding, the recipient is prohibited from retaliating (including intimidating, threatening, coercing, or in any way discriminating against the individual) because of the individual’s complaint or participation. OCR will continue to vigorously enforce this prohibition against retaliation.
If OCR finds that a recipient retaliated in violation of the civil rights laws, OCR will seek the recipient’s voluntary commitments through a resolution agreement to take specific measures to remedy the identified noncompliance.4Such a resolution agreement must be designed both to ensure that the individual who was retaliated against receives redress and to ensure that the recipient complies with the prohibition against retaliation in the future. OCR will determine which remedies, including monetary relief, are appropriate based on the facts presented in each specific case.
Steps OCR could require a recipient to take to ensure compliance in the future include, but are not limited to:

training for employees about the prohibition against retaliation and ways to avoid engaging in retaliation;

adopting a communications strategy for ensuring that information concerning retaliation is continually being conveyed to employees, which may include incorporating the prohibition against retaliation into relevant policies and procedures; and

implementing a public outreach strategy to reassure the public that the recipient is committed to complying with the prohibition against retaliation.

If OCR finds that a recipient engaged in retaliation and the recipient refuses to voluntarily resolve the identified area(s) of noncompliance or fails to live up to its commitments in a resolution agreement, OCR will take appropriate enforcement action. The enforcement actions available to OCR include initiating administrative proceedings to suspend, terminate, or refuse to grant or continue financial assistance made available through the Department to the recipient; or referring the case to the U.S. Department of Justice for judicial proceedings.5
OCR is available to provide technical assistance to entities that request assistance in complying with the prohibition against retaliation or any other aspect of the civil rights laws OCR enforces. Please visithttp://wdcrobcolp01.ed.gov/CFAPPS/OCR/contactus.cfm to contact the OCR regional office that serves your state or territory.
Thank you for your help in ensuring that America’s educational institutions are free from retaliation so that concerns about equal educational opportunity can be openly raised and addressed.

Sincerely,

/s/

Seth M. Galanter
Acting Assistant Secretary for Civil Rights

1 OCR enforces Title VI of the Civil Rights Act of 1964 (Title VI), Title IX of the Education Amendments of 1972 (Title IX), Section 504 of the Rehabilitation Act of 1973 (Section 504), the Age Discrimination Act of 1975 (Age Act), and the Boy Scouts of America Equal Access Act (Boy Scouts Act). OCR also shares enforcement responsibilities with the Department of Justice for Title II of the Americans with Disabilities Act of 1990 (Title II), which prohibits discrimination against individuals with disabilities in state and local government services, programs and activities, regardless of whether they receive Federal financial assistance.

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About Me

I am the mother of three beautiful children. Two of them have graduated from high school. One of those is in college taking remedial courses because she didn't receive the free and appropriate education that she was entitled to. I am now paying college tuition for that education.
My third child is autistic and was forced to drop out of school. He was receiving no services for his autism and was no longer progressing in his classes.
He was being destroyed emotionally, psychologically, and mentally. He was forced to take medication to just attend school and that affected his liver. He is 17 years old. He has a nonverbal IQ of 123 and the interpersonal skills of a one year old.
My taxes have paid for an $8.6 million administration center, $12 million aquatic center, $250,000 for band uniforms,and a $15 million elementary school with empty classrooms. They have not paid for my children's education. My district boasts that they spend the least amount per student of any other district in the area. But, they will hold up their facilities to those in the much richer county to the west. We also have the second highest tax levy in Jackson County.